Life on aromasin
Comments
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Wave, great to hear how well you are doing. I have fairly minor issues which come and go. Aromasin is certainly doable for me and I am very grateful to have it.
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Oh I'm so happy to hear aromasin is not a big deal to take for u gals--I hate to hear how it can be or some.
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I hate hearing that others are suffering too, Cami. It's good that people have this place to vent. And I'm not saying I am symptom free, just that my SEs aren't very severe.
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Yorkie as long as (we say) doable then that's not to bad for these Al's--well u know how big these pills are I can't imagine why and how they can cause so much misery to this day.Mine have been horrible yet I do hate to say it for newbies so I'm glad when they are OK and like we say we are all different so whatever we end up taking just has different SE's--but that tiny little thing. hahaha
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srbl62 - how long did you take a break for before feeling better? Are you still taking Aromosin or did you ditch it?
Camillegal - I too have developed arthritis and have all my lumber vertabrae almost touching. My docs don't give me any pain meds but then I haven't asked for some. What pain meds do you use?
Thx,
Kat
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Kat if I could I would take vicoden, but I get all heart lbing on that or perc,, or norco (any of the goodone) so I take Tylenol 4, it kind of makes me more tired but does releave my side pain some and my back pain if I don't do to much, but all those discs and vertabrae are crumbling up too so keep a watch on this. I started PT that is supposed to be a big help and I really tried excercising everyday. But my side and hernias got in the way of that so they put that on hold til they can figure out what and if they can do anything about my side.
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I had minimal SEs, mostly joint pain but then
Achilles Tendonitis in both feet occurred, then really bad inner R knee pain became progressively worse to the point that over the past 6 weeks, 4x I was woken up from a dead sleep feeling like I had been stabbed.
Scale of 1-10 this was a 15. I was panting like I was in labor. My son got me Aleve, ice pack but I continued wreathing in pain for what seemed like forever.
Recent Bone Density showed a deterioration in my spine and xrays from a year ago showed arthritis in my rt knee and rt ankle, which must be worse by now.
My oncologist wanted me to start taking Flosamax,1x a week plus mega vit D on top of calcium with D.
I called him and said enough. I can't take Exmestane any longer and am afraid to take Flosamax. I said so 5 years out I might be cancer free but what good is that if I'm crippled in bed? He disagreed that Exmestane causes arthritis, only joint pain, but that's what Arthritis is! Plus I've read numerous medical journal articles that connect the 2 do I don't know why he said that. Articles also say the damage it does is irreversible.
He's told me to stop taking the Exmestane and after 2 weeks start taking Tomoxafin.
I'm post menopausal and in reading all the SEs for Tomoxafin, I'm down. Seems like your damned either way.
I just lost 15 pounds and Tomoxafin causes weight gain? 3 more years of these meds?0 -
Yes constant flem in the back of my throat, which is at its worst in the morning.
Geez, I didn't even consider Aromasin as the cause. Have been taking myself it's allergies or a cold coming on!0 -
Also, before Aromasin/Exmestane they tried giving me Armidex and then another, the name escapes me, but those two caused such severe joint pain he had to prescribe, and I had to take, Percosett to bear it.
Obviously couldn't be on those long term so when Aromasin was prescribed and I only needed OCT 2x the day I was happy. But that happiness sure didn't last, for me anyway.
I'm so glad, some of you are able to take Aromasin without having bad SEs.0 -
Camillegal, what's Tylenol 4? I've only heard of Tylenol 3.
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Eve even the Dr didn't hear of it before me. hahaha It's thsame but had double the codeinne in it. I love the way most Drs. won't exactly admit that all this is from the Als--I've said I felt better on chemo than this crap. and my dmage is done I hope. I just lost a fingernail and feel like another is going to come out. WTF
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Cami, are your fingernails coming off because of Aromasin or chemo? I've heard that about chemo, but not Aromasin.
Eve, I'm really sorry you're having such a hard time. About 20% of people get severe SEs on Aromasin. Sucks.
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Yorkie they came off during chemo, I'm not on it now so Aromasin???? I don't know- This crap never ends.
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Wow, that's horrible. Do you take Biotin? I used to have very weak, brittle nails until I started taking it. I know your nail situation is much worse, but maybe it would help.
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During chemo Cami? OMG!During chemo my nails started detaching from the nail beds, which caused an infection in 3 nails and I ended up being hospitalized for a week. When the IV antibiotics weren't working, they pulled off the 3 nails,but they haven't been right since.
They said they would grow bk as before. NOT.
I have to wear nail polish bc they are so unsightly. Now I'm questioning if aromasin is to blame too.
Yorkie, is Biotin prescribed or OCT?0 -
Biotin is over the counter. You can get it at any drug store or grocery store.
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Yorky I tak Biotin,
Eve yes me too with chemo and now it's starting all over again????
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Biotin really helps counter some effects of having zero estrogen.
I also can't believe the way Drs. refuse to admit that this drug is disabling. I'm at a top rated cancer center and they just say "take it". No meds for side effects.
I was on Arimidex for 8months and it crippled me. Aromosin is better but I think it causes autoimmune diseases. Actually I think it's this drug and the cancer treatment combined that's the cause. One doctor told me that even if I stopped taking AI's altogether, I would still have arthritis, fatigue, foggy brain, etc. I'm not sure I believe that but haven't tried.
One doc told me to take 4 advil at a time. I can and have taken vicodaine but I worry that these could just mask the pain and you could end up going to surgery on the back if not treated.
Eve - I'm with you. Don't take more drugs for SE's and seriously consider kicking this drug to the curb. I'm going to look into alternative therapies. It's a time tradeoff versus quality of life. I haven't finished 2 years on AI's yet.
Body aches every few months that are so severe they are like going into sepsis is not doable.
Hugs,
Kat
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Kat I agree with you, the damage that has been done is irreversible now--it's a done deal, but they act like maybe and yet so many women get all this from Al's---this is like rock---us---hardplace so it's confusing what to do sometimes.
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Hi Katarina,
I took a two month break from Aromasin. I am back on it now. I'm gonna stick with it but when I feel I need a break, I will take one. With my stats, I will probably be on this the rest of my life. It's a little better than Aremidex, for me.0 -
Gals:
The aromasin did not help with metastatic breast cancer so am going on chemo next week. Real bummer - but I need to know how much biotin you took - DETAILS, please!
Marianne
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Marianne, I take 7500 MCG per day (typical OTC dose). But I have only been taking it to help my nails (which it has btw). I had NO idea it may also be a cancer preventative.
Maybe a therapeutic dose is larger?0 -
Yorkie:
I wasn't thinking of it as a cancer preventative. It is just that I have read of so many women having nail problems with chemo and I thought I would give it a try. But wouldn't it be wonderful if something over the counter did work as a preventative.
Marianne
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Marianne I'm sorry how this is going for u--there are no safety tips. or rules in this crappy disease.
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Marianne, so sorry to hear your going to chemo. I didn't see you stats, so don't know how long you've been on Aromisin or in remission but this is heartbreaking and we all wish you the very best. We'll pray that chemo does the trick.
Reiki healing really helped me through my cancer treatment. I am having a session tomorrow. If you get someone who is the real deal, you are with a healer who can relieve you of all your aches and sufferings in one hour. I have experienced that while undergoing chemo with horrible SEs.
Biotin was recommended to me by my hairstylist. She said it works wonders on hair and nails and now that I've been using it I can attest to that. I don't know that it has any relation to cancer but it definitely offsets the effects of zero estrogen from the AI's. My hair is lush and not dry and my nails are, well, nails which I've never had.
I have now been diagnosed with "flu-like syndrome". I googled it after my doctors appt. and realized it is a SE of cancer treatment, AI's and other diseases. Isn't that interesting. Nice to have a label for what I was going through. Even if it's not right, it's better than nothing or being told your fine when you know your not.
Hugs,
Kat
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Kat another thing to have, they just keep coming. I remember saying and I still do but not as often, I feel like I'm coming down with something ALL THE TIME--And now when I do have something I always hear why didn't u come sooner??? Excuse me--I never know if it really something or not. Very confusing for me. And before thisI rarely got anything or felt like I was. And now I have so many goofy things going on inside that has pain, I'm living in another workd of what to do. The Drs. too. But it's tiring, physically and mentally I think.
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I have done reiki a couple times, considered getting trained to do it myself.
me, when stressed or before appts or tests....massage, facial, mani, pedi or whatever makes it easier
don't want any more meds than I have to but easy to get hooked on massage or facials!
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The original breast cancer was in September of 2001. At that time I had a lumpectomy, 40 rad treatments and then took Tamoxifen for 2-1/2 years. After complaining to my oncologist constantly about the se's of tamoxifen he put me on Arimidex. Just as many se's for that one but I stayed on it for another 3 years.
In the summer of 2012 I began to have discomfort in my hip. Finally in Dec. of 2012 it was diagnosed as metastatic breast cancer. Had rad treatments which really helped the hip and then was put on Exemestane. So many side effects I hated it and even stopped taking it for almost one month at one point. Anyway a lesion has now shown on my liver so that is why the oncologist wants to begin chemo. I am having a port inserted tomorrow and will probably begin the chemo next week.
It just makes me wonder if anyone ever has this lousy disease just one time and then never sees it again.
Keep warm thoughts coming my way as I need all the help I can get.
Marianne
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The only ones that I know personally are my aunt who was dx in the 60s and had a UMX. Never took any treatment. She lived over 25 years and died at the age of 61 of heart attack. My cousin had BMX in 80s and never took any treatment and lived over 30 years and died in her 70s of Alzeheimer's. My friend had partial mx of one breast refused any treatment and that was 12 years ago and she is still going strong. So I don't know. Everyone is different. Sometimes I wonder if all these treatments may sometimes make things worse. It's according to each individual person. I'm taking Aromasin, but I'm scared of it. I feel like I'm damned if I do and I'm damned if I don't.
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A grandmother in the family had a MX in the 1970's and lived thirty more years, well into her 90's. She never had any other treatments. And I know of another woman in her 90's who had an MX in her 70's, along with chemo and tamoxifen. Ten years later she had another MX and continues on tamoxifen. She's been on tamoxifen for 20 years.
Seems to be the luck of the draw.
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